Last year I wrote about the cognitive dissonance between the marketing materials produced by Rogers Memorial Hospital, in Oconomowoc, Wisconsin, and its actual therapeutic programs and practices.
That post produced a letter from Rogers' CEO himself, complaining about my "airing my grievances in a public forum" rather than talking directly to him about them.
Dude, that's what blogging's all about. Besides, I can imagine how open he would have been to my criticisms. Yeah, right.
This time around, I'm not just writing about presentation. I'm writing about practice, therapeutic practice as it's being executed at Rogers. And it stinks.
It seems that Rogers has changed its practices around the use of feeding tubes for anorexic patients. In the past, feeding tubes were considered something of a measure of last resort, sometimes necessary to save a life but something to be avoided when possible.
Not anymore. And not only that: feeding tubes are being used to keep patients at Rogers when parents want to bring them home.
Case in point: A family whom I'll call the Smiths, whose young adolescent daughter was admitted to Rogers a few weeks ago. The family was told the girl must have a tube, and although they weren't in favor, the tube was administered. Fast forward 10 days or so. Rogers is telling the family the girl has made "little progress" and urgently needs admitting to its 30-day residential program. Family can get no information on why so little progress has been made, even with the tube. Family has been researching, and has decided they want to use family-based treatment, the Maudsley approach, to help their daughter. Family tells Rogers of their intentions and asks when daughter may be safely transported home.
Next thing family knows, their local county department of child protection services is threatening to remove their daughter from their custody if they take her home. Rogers continues to insist that daughter cannot be moved so long as she's on the tube. Family says most girls with their daughter are also on feeding tubes, which constitutes a large shift in treatment protocols at Rogers.
The girl is eating. She's terrified. She wants to go home. Her family wants to bring her home for FBT. Rogers, which claims that it incorporates some FBT in its therapeutic protocols, is playing dumb and insisting that FBT would constitute child abuse and that the girl cannot safely be sent home.
The therapists at Rogers are (or should be) familiar with the studies on FBT, which show that it is very successful for adolescents under 18 who have been sick for less than three years. (It's been successful for others, too, but there are no studies yet on those populations.)
Their actions in this case and others are deeply disingenuous. Feeding tubes are a necessary evil at times. But families should be the first line of treatment and support for adolescents--especially when the family is committed to the task of helping their child recover.
Shame on Rogers.
Sunday, October 12, 2008
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14 comments:
This isn't limited to Rogers, however. My friend (who I met in treatment) was hospitalized in high school, and was compliant and gaining weight and just wanted to go home. Her parents saw no reason why she couldn't- she was medically stable, willing to set a contract for weight gain, etc. The hospital found out and said that she would be taken from her home if her parents discharged her from the hospital AMA. And if you leave AMA, insurance doesn't pay. So she stayed in the hospital for 3 months.
I think it's an institutional lack of understanding of ED treatment at work here. I've been to Rogers and I'm no fan. But they're hardly alone in their thinking. That being said, I also know people who have done well after Rogers, and who have had very different experiences.
Wow, that's just...awful. And unbelievably sad. It's not as though this family is denying that their child is ill. They've DONE THEIR HOMEWORK on the disease and found a treatment supported by ample scientific evidence, not some kooky pie-in-the-sky fad, which says to me (and SHOULD say to Rogers!) that they're involved, caring parents who want to do right by their child. Unless their child is seriously medically compromised and in need of inpatient medical care (which, if they're advocating a move to a residential program, is likely not the case), this hardly constitutes abuse--the parents are simply exercising what SHOULD be their RIGHT to make a decision, based on good information, about treatment OPTIONS.
This is just...outrageous. I feel so sorry for this family...and hope they manage to resolve this insanity soon.
I found the adult women residential program to be very beneficial. It was the 5th program I was in, and I am still doing well 10 months after discharge. I thought the MDs and staff were outstanding.
Perhaps there is a difference in the IP/residential, adult/adolescent programs?
Anon,
It sounds like this admission was intended to medically stabilize the patient, not for long term AN treatment. If they aren't able to get the child progressing after over a week, even though she is complying and she's tubed, then there is something wrong. A second opinion is in order, at a minimum, since they can't accomplish that.
I'm mystified not only by the apparent incompetence, but at the attitude toward the family that has entrusted their daughter to Rogers care. I wish this family well and have a lot of confidence in them and the professional team they are lining up to help their daughter post-discharge.
I have a friend who went through Rogers adult program at 19 years old, after a 4 year battle with anorexia. She went in with anorexia, and she left with anorexia. Several years later she still has anorexia.
The parent who wants to remove their child from rogers, have they considered contacting University of Chicago and having her transferred there? They do inpatient stabilization on a medical floor of the children's hospital.
Sadly, that's the norm. My daughter was in an eating group with a number of young women who'd been through Rogers for anorexia. They were all still quite ill after being discharged.
The parents are aware of University of Chicago. The problem right now is that they cannot take their daughter out of Rogers, or they'll risk losing custody.
This is a good post of your experience. Please post short summary your review and/or a link of the review on rogers memorial hospital under our website: http://www.ushospitalfinder.com/hospital/Rogers-Memorial-Hospital-Oconomowoc-WI
It will help our users and they research information about rogers memorials hospital
The family should retain a lawyer and go to court for an order directing Rogers to release the daughter to her parents so she can get better care. The lawyer would probably arrange for a qualifified expert to testify on their behalf that Maudsley is not only a reasonable alternative, but the one with the best evidence to support it. After winning in court, the parents should go to the media and a story should be plastered all over newspapers, radio, TV and Internet about what Rogers has done. It should not be difficult to find a lawyer who would handle the case pro bono, if necessary.
This is off topic, but I just wanted to say thank you for the wonderful comment you made today at the NYT. It didn't appear many readers had considered the downsides of negative stories of fat children, trying to motivate them to adopt healthy diets and lose weight, until your note. By calling parents' attention to the potential harms of heightening body weight and eating issues, you helped so many young girls and made a difference in their lives. Sandy
Thanks, Sandy, but I don't see any awareness at all in the comments that followed mine. Just more of the same claptrap. :-(
As having close experience is Rogers Memorial, I must say the staff is untrained and the therapists are burned out. They don't care about their jobs and they don't care about their patients. It's the most unethical practice I have ever seen and this woman is absolutely right- feeding tubes are the norm. Rogers is all about the money and so many times people will leave the program and come right back. Don't eat? Hey, have a feeding tube. Doesn't work- okay, go residential. MONEY MONEY MONEY. Yes, the program has worked for some but it has worked a lot less for others. I have no respect for this place.
Unfortunately, this is happening all over the country. I have been suffering for about 20 years trying to beat anorexia and my last ip stay, every patient under 18 was put on a feeding tube within a week of admittance. I have unfortunately been through this facility in MA before, and it has never been so prevalent. I asked about it (I'm in my 30's) b/c I couldn't understand the logic and I was told it's insurance - get them in, get the weight up, and get em out. Send them to resi if they need more treatment.
I refused a tube back in 2005 and was kicked out for noncompliance. I would understand it if I were not eating 100% or following all advice. They said may as well try the tube and see if your weight goes up. Um. No. I'm not getting a tube as an experiment. Damn it. Find the cause, not the symptom for me. Passing out despite eating 100% does not mean a tube is needed.
ED treatment across the nation is really suffering- I don't think it just applies to RMH. Maybe it would be worth trying to apply to RMH and improve things there rather than just complain about what is clearly wrong with it- I agree that things are seriously not right!!!
As more and more treatment centers get shut down around the country due to the economoy, we all need to figure out ways to improve the ones that are still here because treatment is needed for many.
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